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Author Topic: Tired ALL THE TIME!  (Read 6183 times)
Annig83
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« on: June 03, 2012, 08:07:53 PM »

No matter what solution I am using, I am exhausted all the time.  I sleep for hours in the morning, and then need another nap by the afternoon.  My hemoglobin and all the other levels are stable and great.  What's wrong with me? 
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
deniferfer
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My nickname is princess

« Reply #1 on: June 03, 2012, 09:07:49 PM »

 I'm the same way. It seems no how much sleep I get, I will still being sleepy. Do you have the b12 shot? My dr started me on that about a year  It has made so it's not as bad.
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1981-1995: Perfectly fine
1996: November, started feeling sick
1997: April, creatine at 17 and began dialysis    
1997: May Place on PD
2006: Had to replace PD tube
Grumpy-1
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Make me the person my dog thinks I am

« Reply #2 on: June 04, 2012, 05:55:11 AM »

OK I'm sure I'll get a bunch of you flaming me on not following Dr orders, BUT  I took myself OFF ALL THE DR. prescription drugs.  I did this about 4 months ago and have been monitoring my lab results closely.   When I started dialysis about 2 1/2 years ago, I took all the drugs the Dr prescribed - tried to be a good patient and not skip any or over dose.  Well I noticed that about 4 months into this life, I began to lose the strength in my legs.  I couldn't get up out of a chair without help, I couldn't climb the stairs without lifting myself using my arms.  I was tired all the time and some days sick and achy all over that I couldn't get out of bed.    Then over a holiday weekend where I have 4 days off work, I got to sleep in late and late and late so that I was out of my normal cycle and didn't take any meds.  Just keep telling myself that I would catch up tomorrow.  Well by the next work day I was back on schedule and notice that I didn't feel as tired, had more energy, could walk better.  So I decided to try an experiment. I stopped taking the Dr prescription drugs.  As I said that was four months ago.  And I'm feeling better every day.  I have more energy, more strength in my legs.  Rarely do I feel achy and sick as to have to stay in bed all day. 

WARNING !   I DO NOT say for anyone else to stop taking their meds, but it worked for me.  So far I haven't said anything to the nurses at the clinic or the Drs.  But at the next lab appointment, I'm going to spill the beans and let them know. 

Grumpy
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Make me the person my dog thinks I am
wbdoug
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« Reply #3 on: June 04, 2012, 06:42:01 AM »

WARNING !   I DO NOT say for anyone else to stop taking their meds, but it worked for me.  So far I haven't said anything to the nurses at the clinic or the Drs.  But at the next lab appointment, I'm going to spill the beans and let them know. 

Grumpy

Just two questions: Are you on PD and what specific drugs are we talking about?

Bill
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8/3/2011 PD Cath installed
Life keeps interfering with my plans
Grumpy-1
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Make me the person my dog thinks I am

« Reply #4 on: June 04, 2012, 07:14:19 AM »

Yes I'm on PD.

The stuff I quit are:
Rena Vite (that I may start back on as it is a vitamin)
KLOR CON (potassisum supplement)
Calcitriol (parathyroid)
Lecothroxine (thyroid)
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Make me the person my dog thinks I am
lmunchkin
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"There Is No Place Like Home!"

« Reply #5 on: June 04, 2012, 08:16:47 AM »

John sleeps all the time!  He is bored to tears, so what does he do, he sleeps.  He is inside all the time and watches tv and sleeps, wakes up watches more TV and sleeps more.  I don't know if he is tired due to boredom or the disease, but both can make you tired.

God Bless,
lmunchkin :kickstart;
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11/2004 Hubby diag. ESRD, Diabeties, Vascular Disease & High BP
12/2004 to 6/2009 Home PD
6/2009 Peritonitis , PD Cath removed
7/2009 Hemo Dialysis In-Center
2/2010 BKA rt leg & lt foot (all toes) amputated
6/2010 to present.  NxStage at home
wbdoug
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« Reply #6 on: June 04, 2012, 09:08:56 AM »

Yes I'm on PD.

The stuff I quit are:
Rena Vite (that I may start back on as it is a vitamin)
KLOR CON (potassisum supplement)
Calcitriol (parathyroid)
Lecothroxine (thyroid)
So your labs for the last three or four months have been comming out good? The only one of those I can relate to is calcitrol.

I have noticed that I am more tired than I used to be but not so bad it has taken me down.

Bill
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8/3/2011 PD Cath installed
Life keeps interfering with my plans
Desert Dancer
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« Reply #7 on: June 04, 2012, 10:55:39 AM »

Yes I'm on PD.

The stuff I quit are:
Rena Vite (that I may start back on as it is a vitamin)
KLOR CON (potassisum supplement)
Calcitriol (parathyroid)
Lecothroxine (thyroid)

Obviously it is your right to refuse medications but I do hope you're keeping an eye on your PTH (the calcitriol). Having more energy won't do you any good if your bones crumble out from underneath you.
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August 1980: Diagnosed with Familial Juvenile Hyperurecemic Nephropathy (FJHN)
8.22.10:   Began dialysis through central venous catheter
8.25.10:   AV fistula created
9.28.10:   Began training for Home Nocturnal Hemodialysis on a Fresenius Baby K
10.21.10: Began creating buttonholes with 15ga needles
11.13.10: Our first nocturnal home treatment!

Good health is just the slowest possible rate at which you can die.

The glass is neither half-full nor half-empty. The glass is just twice as large as it needs to be.

The early bird may get the worm but the second mouse gets the cheese.
Grumpy-1
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Make me the person my dog thinks I am

« Reply #8 on: June 04, 2012, 11:44:12 AM »

to all - YES I've been watching all the lab reports.  My clinic nurses are VERY good about calling me with the results about 2-3 days after they are taken.  All labs result haven't changed much or have improved.  The only one that everyone focuses on are the potassium (at bit low) - so I get to eat more steak, chicken, fish etc.  LOVE that  Grumpy 
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Make me the person my dog thinks I am
Annig83
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« Reply #9 on: June 04, 2012, 07:07:30 PM »

I've been on medication since I was 13, most are the same.  There's something definitely not right with me... I'm thinking I may be depressed
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*~Annie~*
Any change, even a change for the better, is always accompanied by drawbacks and discomforts.
Arnold Bennett
Even though I have gone through so much with ESRD, my son is my inspiration to keep going.  He was delievered at 28 weeks weighing 1 lb 12 oz and today he is a fun-loving 1 year old, whom I love with all my heart!

Diagnosed with Nephrotic Syndrome Age 13- 1996 Unknown Cause. 35% functioning of both kidneys.
Stable until Age 27; complications with pregnancy, loss of 25% function. (Current functioning is between 5-7%).
December 3, 2010- PD Catheter Placed on Left Side
March 2011- PD Catheter Removal (Due to malfunction)
April 2011- PD Catheter Placement on Right Side
April 2011- Surgery to adjust Catheter and "tacking of fatty tissue"
May 2011- CCPD Started
October 2012- Infection of PD catheter.  PD Cath. removal surgery. Perma-Cath. Placed for Hemodialysis.
Hemodialysis started October 12, 2012.
January 16 2013- First Fistula
On Transplant List in Indiana, awaiting 1st Transplant at IU Health in Indianapolis.
smcd23
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The patient, the baby and the donor - October 2010

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« Reply #10 on: June 05, 2012, 06:19:13 PM »

I was going to suggest talking to someone about mental health - dialysis and the toxins in the body can mess up the brain chemistry. I was also going to ask how your PTH, calcium and phosphorus are?
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Caregiver to Husband with ESRD.

1995 - Diagnosed with vesicoureteral reflux and had surgery to repair at age 11. Post surgery left side still had Stage I VUR, right side was okay. Both sides were underdeveloped.
2005 - Discovered renal function was declining, causing HBP. Regular monitoring began.

March 2008 - Started transplant evaluation for preemptive transplant due to declining function.

September 16, 2008 - Transplanted with my kidney.
September 18, 2008 - Kidney was removed due to thrombosis in the vessels in and leading to the kidney.

October 2008 - Listed in Region I

May 2009 - Started in Center Hemo
January 2010 - Started CCPD on Liberty Cycler

June 15, 2012 - Kidney transplant from a 43 year old deceased donor
June 22, 2012 - Major acute rejection episode and hospitalization began
June 27, 2012 - Nephrectomy to remove kidney after complete HLA antibody rejection. Possibly not eligible for another transplant, ever again.

Now what?
highway61
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« Reply #11 on: June 05, 2012, 07:15:14 PM »

For the short time I was on PD I was more energetic than before. Not in a normal amount just as a comparison to how I was before dialysis.

Prior to dialysis I was pretty much in denial that this was going to kill me until my neph, and primary care doctor both told me I was heading towards being past tense. I got worse and worse and got to a point where I was falling asleep at the wheel driving too and from work. That convinced me that they were on the level. Plus my legs were about 21 inches around.

Once I started PD the swelling went down, the falling asleep went down. and other things improved. I did feel tired a lot, but not as bad as before. I didn't fall asleep while driving anymore.

If you are still feeling tired, talk to your neph about it.
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austinsoul2011
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« Reply #12 on: June 09, 2012, 11:33:22 PM »

My goodness it's so interesting to see all these comments that relate to my father's constant fatigue since he started PD, cuz he is ALWAYS tired.  I see him sleeping and snoring during the evenings, but he still wakes up in the morning feeling beaten up and short of sleep.  He can't get off his couch on some days, and it's a struggle just to sit up or stand at times.  His protein levels always measure a bit low in his labs, so that probably has a lot to do with it.  But everything else -- hemoglobin, iron, phosporus, BP, temperature, et al -- are fine.  Glad to hear about the vitamin B shot; that might be an option.  We encourage him to exercise for more energy, but how can he exercise if he's always so weak and tired? 

Yes, he sleeps constantly throughout the day, and still complains of weakness and lack of sleep.  Oddly enough, hemodialysis seemed to keep him more energetic, as he would sleep for a few hours after each session and then would be fine and lively up until the next hemo appointment.  I know PD means more frequent dialysis than hemo, as he is clearing more toxins regularly, but for some reason he seemed more "alive" with hemo -- even though he hated the difficult sticks and depressing crowd... sigh.
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Bill Peckham
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« Reply #13 on: June 10, 2012, 10:57:01 AM »

Sleep apnea need to be considered too. People who use dialysis are prone to a variety of sleep disorders and they are under treated/diagnosed.
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http://www.billpeckham.com  "Dialysis from the sharp end of the needle" tracking  industry news and trends - in advocacy, reimbursement, politics and the provision of dialysis
Incenter Hemodialysis: 1990 - 2001
Home Hemodialysis: 2001 - Present
NxStage System One Cycler 2007 - Present
        * 4 to 6 days a week 30 Liters (using PureFlow) @ ~250 Qb ~ 8 hour per treatment FF~28
highway61
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« Reply #14 on: June 10, 2012, 08:27:34 PM »

I agree with Bill.

I was already diagnosed with sleep apnea before going on PD. I have been using a CPAP mask for quite awhile. THis started before  dialysis. I would certainly that the time to check it out.
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billybags
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« Reply #15 on: June 11, 2012, 04:05:52 AM »

My husband took his self off cholesterol tablets after 3 years, he suffered with aches and pains in his legs and arms. Been off it for about 8 months, legs a lot better and cholesterol is good at 4.20. So why take this crap.
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theone
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« Reply #16 on: June 18, 2012, 05:27:48 PM »

I suggested you talk to nurse/doctor about your problem.

I was in similar situation couple months ago (Tired, falling assleep, leg clamp) and it turned out that I didn't have enough dialysis.
So, I was told to do around the clock dialysis. I told 3 weeks off, stayed home and just focused on doing dialysis.
Now, I am feeling much better.

Theone.
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JLM
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« Reply #17 on: June 18, 2012, 06:21:10 PM »

My husband took his self off cholesterol tablets after 3 years, he suffered with aches and pains in his legs and arms. Been off it for about 8 months, legs a lot better and cholesterol is good at 4.20. So why take this crap.

I, too, have a bad reaction to every cholesterol medication I had been put on.  My neph had me take Red Yeast Rice (600 mg) capsules and my cholesterol is good without those nasty side effects.
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I'm just where God wants me to be, not one step ahead nor one step behind.
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